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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Friday, December 02, 2005

 
Beyond Words: The Drawings of Jonathan Lerman
- Insight into an autistic Mind -
By: Estée Klar-Wolfond, M.A., Curator

There are many myths about autism. Perhaps because there are so many pieces of the puzzle, so many areas of the brain that are affected and are still being studied, that it leaves room for too much speculation. As a result, we take the view that people with autism, and their behaviors, are a mystery to us. Like aliens or foreigners, we watch their behavior with bewilderment, and sometimes fear.

This view is a danger to people with autism because so many people are affected. Currently 1:166 children are diagnosed with autism in Canada and it is most diagnosed after mental retardation and cerebral palsy. The condition affects communication, socialization, perception and movement. Its symptoms can be mild or severe. Children with autism are treated all to often for their behaviors and not the core of autism, which then reduces their self-esteem. Too often, we hear that we are seeking to CURE autism, when many autistic people say they do not want to be cured. While one opinion may not reflect another, it does alert parents that we must be careful of whose interests we’re purporting.

Michelle Dawson, who was profiled in Canadian House and Home (2003) is a letter carrier in Montreal who has autism. “She laughs easily, reads voraciously and takes pride in her perfect work record. She has language problems – she’s not sure if she really understands the words she uses or if she just memorized how to use them. She says, `I really like books, but mostly I like looking at the words. But having read the same stories over and over again, I have them in my head and use whole sentences from them.’ She says that because of her quirks, people may judge her to be weird – unfairly, she states, `because its much like judging a blind or a deaf person while not acknowledging that the person is blind or deaf.’ Michelle is adamant that people like her be judged for who they are and what they can do, and not some behavioral standards developed by so-called “normal” people. `What’s wrong with being autistic?’ she asks. `Why are we considered to be so disastrous? Why are we such a mystery? I think we should be allowed to be who we are. We work hard, we’re honest, and we contribute a lot without getting much back.’ Michelle wants people to understand that it’s not easy having autism in a non-autistic world. `I think people should recognize that the entire burden should not be on us to be like them, but rather, to acknowledge how hard it is for us.’”

Autism is not really a mystery. At the core, people with autism are like all of us – they need to be accepted for who they are, to be happy, to have fulfilling work and to be loved. As a mother of a 3 year old son with autism, I feel strongly that he, and others like him, be integrated in a regular classroom – as integration in the school sets up the foundation for a democratic society where no one person with special needs be marginalized. Consider this from a severely autistic adult:

All my life I was enrolled in classes for the profoundly retarded. The pain of that isolation, I can’t describe. Some classes consisted of putting flashlights together and then they would be taken apart for the next day’s project. I never spoke or made eye contact. I hummed and self-stimulated. No wonder they thought I was hopeless. I was always treated well but my intellectual needs were never addressed because nobody knew I had any intellect at all. Sad to say, many like me remain in that same hellish situation. (Treacy, 1996, as taken from Paula Kluth, You’re Gonna Love this Kid: Integrating Autistic Kids in the Classroom)

When Jonathan Lerman was 2 years old, his parents state, “he slowly began to slip away.” A formerly alert and cheerful infant, he now wouldn’t respond when his parents called out his name. “The few words he once knew were gone,” they write. “He would tear his hair out in clumps when he was upset. And although we longed to comfort him, he resisted our attempts. It has long been widely believed that children with autism do not comprehend emotional states of others and, indeed, may be extremely limited in their ability to understand or experience their own emotional states. For many years, we assumed it was so for Jonathan.” Then, one day, when Jonathan was ten years old, his parents received a phone call from he school. Jonathan began drawing – “not stick figures and crude backgrounds,” as art historian Lyle Rexer states, “but parts of eyes, mouths, stylishly rendered. In a short time, he was drawing entire portraits, some from life but most from personal sources such as television and magazines. He worked rapidly and with uncanny expressiveness, capturing the essence of his subjects in sharp, sweeping lines and smudged shadows. He was a prodigy, a savant of the charcoal crayon” (Lyle Rexer, How to Look at Outsider Art, pp.64-5). That was written when Jonathan was twelve years old. Today, at eighteen, Jonathan has demonstrated that he, as reflected in his art, is growing through varying representations of people, their interactions and positioning. He also paints and sculpts. The Lermans write: “What does Jonathan’s talent mean in the larger scheme of things? We believe that Jonathan, through his work, teaches us that we must open our eyes to the world of people with autism. He is helping us expand our knowledge and transcend our beliefs about their perceived limitations….Jonathan may only be one person with autism, but we have no way of knowing that other people with autism do not experience a similar degree of emotional connection and simply lack the talents to express it.”

Jonathan’s work has been categorized into the Outsider Art genre – which refers to self-taught art. The critical art world has begun to take it seriously, people collect it, and its market is far-reaching – he is quickly becoming and “insider.” Perhaps Outsider Art has gained status in the art world because as in modern art, let’s use Jackson Pollock or even Vincent Van Gogh as examples, artists are regarded just as much for their psychoses as for their art. The human mind and its manifestations are intrinsically entwined. As I researched and studied creativity and autism, learning about Henry Darger, Joseph Connelly, as autistic artists, or other gifted minds such as writer Lewis Caroll, or philosopher Ludwig Wittgenstein, scientist Albert Einstein, or entrepreneur Bill Gates, those whom I call autism celebrities, I was staggered when I came across Jonathan’s faces. To-date, I have found no other artist with autism like him, who perceives humanity with such profundity. It now becomes impossible for you to leave here today, carrying the myths in your mind that autistic people are rendering machines – only capable of quick calculations and are robotic in the way they live upon the earth. This is why I eagerly wanted to share Jonathan’s work with the Toronto community. Finally, we begin to see visually what is possible. We can see for ourselves that he registers and feels intense emotion, that he has an incredible intellect despite the way he functions. But perhaps, if we were to only consider the surface of him, we would be unaware of it. This is Jonathan’s way to let us into his world. It is his way to self-actualize. By looking at his work, we must then consider how every “disabled” person in the world may have a vibrant inner life. It can be a painful thought, as we who are abled find it difficult to consider a body without movement to be anything other than a quiescent being. The rest of us have not experienced the awesome malleability of the human brain and spirit -- the human ability to adapt to the environment no matter what area of functioning may be impaired.

We know from research by Dr. Patricia Czapinski that anatomical issues may be a factor in facial expression in some autistic people. We know that registration of intense emotions may make eye contact difficult for people with autism. Sad to say, that when we don’t see affect from some autistic people, the inference is that autistic people don’t have emotions. I hope you are now convinced that this is nonsense. What friends and family can do is to speak to an autistic person with respect, directly to them as if he or she is listening, with emotion towards them because they are human and need you. As a mother, I want you to understand that my son, and people with autism have physiological and neurological difficulties with things that the rest of us take for granted.

I don’t really want to bore the reader with the construct of our day. There are many parents of autistic children who live it the same way, more or less. But for those of you unfamiliar with this world, I might be remiss to leave out at least, its essence. Our day is filled with teaching, of learning HOW to use a toy, to put on a sock, to play with a friend, to answer a question, to feed a doll, trying to peddle a trike while steering, or clap hands to a song on cue. Once the how is learned, Adam begins to take off. But the learning is deliberate – step-by-step - and a great deal of patience and understanding is required. Days are filled with therapists coming and going from our home, Occupational Therapists, Speech-Language Therapists, therapists who teach cognitive, social and self-help skills. Weeks are spent organizing of team meetings, programming, more research, advocacy, meeting with nursery teachers, and for us soon, meeting with elementary schools and trying to find the most flexible ones. Adam, and children like him, works hard to learn about their world and function within it, unlike other kids who learn naturally from their environment. Days are filled trying to understand and assist Adam’s sensory requirements as he flaps his hands above his head because he needs to, or wants to be squished underneath a pillow in order to relax. For other parents it may involve dealing with seizures and medications, or episodes of frustrated aggression. My days are spent with endless worry about the future (no matter how optimistic I try to be) – of whether my child will be accepted or bullied, and wanting to protect him from the pain and isolation that discrimination may bring.

No one child or insensitive person will be able to beat the autism out of Adam. Autism is a way of being and experiencing the world. I hope to teach him that no one person can beat his spirit. Autism is so pervasive that it affects the way one moves, feels, and sees. It affects all the senses. My husband once asked the question of “why do therapy if the goal is not to cure autism or make Adam appear less autistic?” to which I responded that the goal for Adam is to understand his world, to learn how to communicate his thoughts and desires, to self-advocate and self-actualize and in essence, to feel fulfilled. Adam is a partner in his own therapy as we learn to respect the way he sees the world while helping him to communicate his own thoughts. It is an unfortunate fact that we feel less valued if we can’t communicate and then get left behind. I uphold the belief that if we build supports to set children up for success, even the most affected can be fulfilled. Autism is as much a social construct in that we do not yet provide enough opportunities to enable self-esteem or identity.

Research, as done by Dr. Wendy Roberts and others around the world, helps us identify early markers so we employ interventions as early as six months of age. We can begin working on socialization and pragmatics earlier which has proven to be beneficial. Thanks to research, some of which becomes refuted or improved by more research, helps us understand the inner workings of the autistic mind. It helps me as a parent understand and empathize with my son so that I can be a better parent. I call upon everyone to support research that enables us to provide better therapeutic interventions.

Upstairs, I have created a wall called the Voices of Autism. These are the people who can talk or write about what it feels like to be autistic. Like all of us in this room, we have different talents and capabilities. Some autistic people are artists, musicians, writers, computer programmers, scientists, bus drivers, professors, doctors, and others have a more difficult time, being in need of extra care.

I am only one parent of a young autistic child who wants to raise awareness so that my son can reach his potential with less discrimination in the world. I am adamant that he not be forced to live in the margins of society because people do not understand autism. But it is those with autism who must also step up to the plate and speak, or draw, communicate in some way on their own behalf, and our responsibility as parents, fundraisers, teachers and scientists to make way. Autism may sometimes be beyond words, but the voices, both reverberant and real, continue to fill my head. May the collective voices of the autistic community become loud enough for us to hear what it means to be human so we can build a more tolerant society.



Estée Klar-Wolfond, M.A.
http//:joyofautism.blogspot.com
Curator of Beyond Words: The Drawings of Jonathan Lerman
December 1-22, 2005.
Lonsdale Gallery, Toronto.

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